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Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in CKD, which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients, caregivers, and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy.
In an online two-round international Delphi survey, patients, caregivers, and health professionals rated the importance of outcomes using a Likert scale (7-9 indicating critical importance) and a best-worst scale. The scores were assessed to determine absolute and relative importance. Comments were analysed thematically.
In total, 1,399 participants from 73 countries completed Round 1 of the Delphi survey including 628 (45%) patients/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis/transplant, life participation, cardiovascular disease, and death. In the final round, patients/caregivers indicated higher scores for most outcomes (17/22 outcomes), and health professionals gave higher priority to mortality, hospitalization, and cardiovascular disease (mean difference >0.3). Four themes were identified that reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences.
Across trials in CKD, consistent reporting of kidney function, need for dialysis/transplant, life participation, cardiovascular disease, and death, which were the outcomes of highest priority to patients, caregivers, and health professionals, can help to support shared decision-making and improved outcomes.